Chapter 19

***If you’re just joining the blog, it may be helpful for you to read the first few posts. This is a story about my walk with my husband Paul in his journey with cancer. These are the email updates from 2011 and 2012, they were used to keep everyone in the loop along the way- with some of my own emotions and thoughts sprinkled in.

 

Thursday – Saturday 4.28.12

I want to thank everyone for all the prayers and to ask that you continue to flood us with love. The last couple of days have been tough on everyone. Nobody likes to hear a timeline when you’re talking about how much time you have left with loved ones. It’s terminal.

The lesions that were detected in the MRI and Pet-scans are of the same cells that were treated in his tonsils. Squamous. They are unclear about the origin. Might have metasicized from that spot before the treatments, or it could have came from the nodules in his lungs- which are now believed to be the same.
They did a biopsy on the lump on his back, this was the one, they felt would most likely not be squamous…  and it was. It normally doesn’t show up in skin, or in muscle… And it was there.

Everyone is baffled. Nobody thought it was possible. The Radiology Oncology Team said that the Tumor board that meets on Wednesdays is made up of some very worldly and educated specialists and NONE of them have has ever seen anything like this. They don’t have a full plan in place and we won’t know what and how they will treat him beyond the initial full brain radiation.

There are six more treatments of radiation. The next step is to keep him strong during the radiation. Keep his weight up, keep him moving and to not lose muscle mass. Then… when he is done with that part, they will discuss options- if any– for chemo.

Typically, they do not treat squamous with chemo to kill it… Usually it’s just to take away the symptoms. So- we need a miracle. A bunch of miracles. And here’s the thing that makes the most sense among all of this confusion… Because they don’t know… because they can’t explain… Because they are baffled- they won’t be surprised when it’s no longer there… Another thing they won’t be able to explain.

To us… We will know. To them… It will be a scientific glitch. My God works like this. Your God does too… And I thank you for embracing this with me.

I debate often about how much to say… Because there are times when I feel hopeless. Then a ray of light pops in… And I see and feel the prayers. There are times when I have sobbed so hard that I shook… Then two seconds later I am calm. It’s God holding me up, when I want to give up.

I told my friend Kitty, that I didn’t want to be strong. I was tired of everyone telling me how strong I was… I don’t wanna be strong. I just want to curl up and fall apart… I just want to be Paul’s wife. I don’t wanna do this. Then in an instant… I feel filled back up. I am strong. I am whole. I am Paul’s wife. Together we will be okay.

He is in no pain. He is walking the halls and eating every meal. He is still wobbly on his feet, but that’s because of the swelling on his brain. He is scared. I am scared. But… Only for an instant… We can’t hide in the fear and let this win. In the love- we find peace.

Our timeline has changed. At first we were told 6 mos to a year. Today we were told three months. Then someone else came in and gave us a glimmer of hope. I am not in denial… I understand why and how they give those times. I am just choosing to believe the best case scenario and believing for a miracle.

The hope came from the chemo team. They said we would discuss options when he is done with radiation. This leads me to believe that there is room for error on their part. Room for my miracle. Room for Paul’s miracle.

When we told the radiology oncology team we wanted to sell everything and move to Hawaii and live on a beach… he said that he has seen people who do it and live for several years…so when they say a time line… it includes really old sickly people… And everyone in between. Paul is healthy. He is strong. He is going to be here for a few more years.

Thanks to the company who have made us smile, laugh and forget about where we are.

Thanks to the friends who have added us to the church prayer lists and those who have traveled miles to hang with him. He feels very loved.
Keep the light, prayers, good thoughts, love and healing coming… We need it.
Peace and Love,
Denise

One thought on “Chapter 19

  1. Hi Denise: I can relate as I was diagnosed with Non-Hodgkins Lymphoma. I had a Squamous cancer removed from my temple area some years back.
    I was at stage 4 in October and I have completed my chemo and on my way to gaining back my lost 30 pounds.
    I wish your husband the best and keep the faith

    Liked by 1 person

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